Sudden sadness

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I’m more than a year and half out from my surgery. It’s one of those things that’s always in the back on my mind. Whether it’s a migraine, a feeling of discomfort around the surgery site, or just contemplating. It’s crazy to me I can still feel the area, like there’s a consciousness to it. I don’t know how to explain it.

I just got incredibly sad sitting here tonight and thinking about the aneurysm and the surgery. Even though it’s been almost two years, I just feel incredibly sad. I don’t even know about what or why, just general sadness it happened. Does that happen to anyone else? I am usually fine with it and it doesn’t bother me the way it is right now.

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Hi. I don’t have the sadness but I think we can over-focus on our condition.

I have a different vascular condition from you guys but I hang around here as a moderator to help @Moltroub and I feel I’ve gone through similar things.

I’ve got something called an arteriovenous malformation, specifically a dural arteriovenous fistula. What these things are is that there is a direct connection from an artery into a vein where a capillary bed should be. The consequence of it is that you get high pressure arterial blood gushing into a vein with the risk of the vein bagging out and rupturing, same as an aneurysm, though veins are not high pressure vessels, not reinforced like an artery. If anyone has friends or family with an AVM, Ben’s Friends has a whole other support group for them.

So very much the same worries as having a brain aneurysm.

The thing I wanted to say was that I had a glue embolization to block off my erroneous connection and while the doc said initially he might need two approaches to fix it, post op he said he’d got me fixed all in one go. Since my operation changed the blood flows and pressures in my head immediately, my head felt very weird post op and if I’m honest, I felt anything other than fixed.

The doc encouraged me on a rescan at about 8 weeks that everything looked great and all I needed to do was get used to the new pressures and I’d be fine but I’d say I only half believed him.

So what happened? In general, I got better. I went back to normal life gradually over the summer (this was 2017) but I had one of my pre-op symptoms reappear briefly in the October and that shook my confidence. I went back to my primary care doc and he referred me back to the hospital and the hospital begrudgingly agreed to a couple more scans over the following year.

The upshot of it all was that nothing else was found. The surgeon said to me again, “I can’t see anything physiologically amiss: it must just be that you need to get used to things still.”

I decided to believe him: that everything was ok. I do think that when we have worries of a brain bleed, we listen to all the internal noises to see if they seem normal (having ignored all of those noises in the previous decades!) we worry about light headedness or a dizziness or anything that goes on and that perpetuates the worry. So I decided that, other than any symptoms that showed up that were screamingly obvious, I’d believe that I was fixed and I’d ignore any of the many minor dizzinesses or noises or other odd feelings that I think we all probably get. If something obvious went off, fair enough, off to hospital, but meanwhile I decided not to watch or listen for every nuance.

I took this approach from about 1½ years post op and it took me until about 2 years post op to decide I was really ok. And that was 5 years ago now.

So, I think it takes a long time for everything to settle down post op (I’m talking as someone who got fixed without having a bleed) and I honestly think putting the experience behind you if you can is some of the best medicine.

Hope this might help. Very best wishes,

Richard

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I used to get sad I couldn’t work anymore after I ruptured for a split minute but then I’d forget. Holidays come around and I’m happy I’m not going out on call. That all took a few years to get to. I didn’t have a craniotomy but I imagine it just takes an incredibly long time to heal our neurons.

For me, whatever emotion I’m feeling I acknowledge and honor it since it took me so long to get them back. It’s also important that I find something every day that brings me joy, doesn’t have to be anything big or new and usually it’s something very simple. It’s perfectly ok to be sad just as it’s perfectly ok to be happy.

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Hey Kate
This is Merl from the modsupport team.
I’ve required a few neurosurgeries with my last back in 2013 and yes, “It’s one of those things that’s always in the back on my mind…”. for me too and I’m 10+yrs on. Like you I have those nasty reminders headaches/migraines, discomfort around the wound sites (especially with the hot and cold weather) and all of the other weird and wonderful side effects.

For me I didn’t call it sadness, but with hindsight, it was a sadness. Initially, after my last surgery, my primary feeling was one of frustration. I had a life before and I wanted that life back, but I couldn’t get myself back to that level. I had worked damn hard to build the life I had, so to then have it all vanish, Ohh hell No. I fought against it, but my body fought back and it won that fight (which only added to my frustration). So, VERY RELUCTANTLY I’ve had to accept that life has changed, I feel that loss and there is a type of grief to that. None of us have neurosurgery on our wish list, we did not choose to be in this position, but the reality is that we are here… So, now what?

The easiest thing for me is to just give up, curl up in bed, stay there, but I’m no quitter (I can’t even quit cigarettes :confounded: :rofl: ) I have found that if I sit down and really think about my situation, my mind can take me down some really dark holes, full of negativity. So, I ‘try’ not to go there. (I say ‘try’ 'cos I’m not always successful) The ‘nasty reminders’ ie headaches etc are ever present, so I try to manage around them and if I can feel my thoughts heading to a dark place, I need to make a change. Be that a change in activity, a change in position or a change of environment. Just something to change my mindset. Rolling those same incessant thoughts over and over and ov… is never good. If I can keep my mind occupied, go online, find something to watch, to research, anything, just take my mind off of ‘Me’ and my damn head.

Both @DickD and @Moltroub make some very good points and I must agree with Moltroub “…It’s perfectly ok to be sad…”, but don’t stay there. Acknowledge your sadness, but move on. If you need help to move forward, there are services out there that can help. I needed help. I had my Dr make a referral to a counsellor, that was one of my better choices. Only wish I’d seen her earlier. She helped me process it all in a much more positive light.

Hope it helps
Merl from the Modsupport Team

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Thank you all :heart: this does really help. I’m usually pretty good and at peace with it all. Some days are just harder than others. I think I was just having a down moment. I agree, putting it behind me, finding distractions and choosing to be OK are all the right things. Thank you for all your support. :heart:

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Glad to know some of it might help.

The other thought that comes to my mind just now is that I know someone who, as a symptom of migraine, gets a fear or dread. It’s quite an unsettling thing to have and since it is not me that suffers with it, difficult to know whether it is possible to rationalise with oneself that it is some false effect driven by the migraine than a real reason for fear or dread.

I wonder if your sadness might be a similar thing: just something provoked by whatever it is that tweaks a migraine or migraine-like symptoms into action. I’ve also read about such things in Oliver Sacks’ book Migraine.

Just in case it is a relevant and/or helpful thought.

Richard

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Yes, oh my gosh YES! I had surgery after a sudden, unexpected brain aneurysm burst when I was running. It went well and I have a clip in my brain now. That was about 15 months ago. Sometimes I just don’t feel like I belong to the world any more, that I’m a weird outcast and that is just not factually true. I’m surrounded by great friends, write and perform music, have a business that keeps me busy and connected, but sometimes I just feel like a lone alien. I can tell you that exercise reeeeally helps, even just a walk. For a while I felt like exercise had been taken from me, but I’ve set modest goals and am working my way back.

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